T+99: Home

Final clinic visit. From left: Dana (CNA in the Clinic), Kim and
Teresa (Nurse Coordinators), Sarah, Todd, Ethan, Dr. Troy Lund;
front: Ann, Child Life Services 
After six and a half months in Minnesota, we're finally home!  In fact, we've all been home for a few days. Sarah arrived in Minneapolis last Tuesday, the day before Ethan's exit conference. We had the exit conference with on Wednesday. Sarah and Ethan flew out Thursday morning. And finished the last bit of cleaning and packing before following with the packed minivan.

I'm sorry for not posting earlier, but when we're home we've got all the house stuff and dog walking in addition to the kid stuff keeping us busy, so it's often harder to find time to write.  In fact, I'm not sure how long this post will be.  Ethan's eyes have already peeked open, so I expect him to wander out shortly and announce the official start to the day.

We're all very, very happy to be home. Ethan has explored the house rediscovering and reclaiming old toys like long lost friends. He's really, really happy to have larger range to roam without having to put on his isolation mask just to go down to the kitchen or playroom.

Caleb, in a tree at cousin Brian's farm. 
While Ethan and I have been away, Caleb had a fantastic time at his "wilderness" day camp.  Once or twice a day now, he'll point out and name a type of flower or tree or plant that he spies.  (He can name more plants than I can, not that that is particularly difficult.)  The camp increased his confidence and his comfort level outside and just generally exposed him to a bunch of new things.  Which, I think, is what summer camp is supposed to do.  Caleb has also started putting things together cognitively and verbally. It's a pleasure to see and hear that his wheels are really turning!

At the moment, we're trying to settle into some type or routine.  It's a process of discovery and evolution.  Ethan and I still seem to be on Minnesota time, waking up at 5:00 or 5:30.  Sarah's been getting up early, too.  So, we're having long, relaxing mornings in our own space.  It all feels rather decadent.

Medically, Ethan is still doing very well, though they drew blood for a new set of chimerisms before we left Minnesota and we still haven't seen those numbers. His chimerisms show his engraftment level and having one marker in the 90s (good) and one marker in the teens (bad) will be a continual source of worry for us even though the doctors say that they won't worry too much unless that 90s marker drops below 50.

Ethan in all his steroid glory last December.
I've also been watching Ethan's weight pretty closely.  About a month ago, Ethan dropped a full kilo (2.2 lbs) in one week.  At 14.6 kgs, he looks a lot different than he did in December when he was a 17 kg pudgy, steroid plumped, little elf. Ethan saw his primary care physician yesterday and she confirmed what Sarah had suspected, that his weight/height are actually pretty much in balance now, so this isn't a bad weight for him to be.  His weight's been stable for the last month, so I suppose I shouldn't worry so much about it.  But I feel like a mother from the old country, "What?  Look at you!  You're all skin and bones!  Come on in and have some fried chicken, and here, have some more potatoes, and some chocolate milk and rhubarb pie.  And when you're done with that, there's a lovely girl down the street I want you to meet.  Oh!  You two would make a lovely couple."

In insurance news, we've been receiving the summary of charges that they've paid for Ethan's care in Minnesota. The current total for this transplant is $855.566.81, added to the cost of his first transplant and Ethan is certainly our million dollar boy. The cost to Sarah and I for the transplant is much, much less. Our total out of pocket will certainly be something less than $3,000 including the travel and lodging costs.  Once they approved our request for a referral to Minnesota, our insurance company, Kaiser Permanente, really took care of us. The benefits were excellent.

Caleb in his cape after the day's "magic camp."  Picture
taken at an outdoor concert featuring Grandpa
Bob's community symphony.
Unfortunately, since I quit my job, we need to change insurance companies.  We've been extending our Kaiser coverage under COBRA, but now that we're back, it no longer makes sense to do that and we're moving over to Sarah's Blue Cross/Blue Shield program.   It's a decent plan, but the bone marrow transplant benefit is capped at $250K.  So you can see why we didn't move over there sooner.

Moving out of Kaiser is kind of a melancholy thing.  Once Kaiser approves something, the benefits are very good, and we've loved the speed and record sharing of their referral system.  When we've gotten a referral, typically we've had an appointment set up within 24 hours and get into see the doctor within the next week, unlike our prior experience with independent doctors.  It's also been nice that each of the doctors has had full access to Ethan's records.

Caleb and Grandpa Bob at the Oregon City Farmer's Market
But....  As we move away from transplant care and start to focus more on assessing and repairing the damage that Hurler's has done, we'll need a multi-disciplinary team of doctors who have seen Hurler's before.  There's just no way we're going to find those folks within the HMO system.  We need to be able to see an endocrinologist in Seattle or a neurologist in California or an orthoHMO's.  In exchange though, we get choice.  Which is what we need at this point.

The big downside of having to move out of our HMO is that we loose access to Ethan's primary care physician.  We've been working with her since before Ethan's first transplant.  She's very good at looking at Ethan as a whole kid and balancing and prioritizing what's going on with him.  And she's been a great big help in other areas and very easy to work with and we will be sorry to loose her.   Which means we've got to find a new primary care doc for Ethan.

We've talked with Ethan's transplant doc and with Ethan's current PCP about what we should look for in a new pediatrician for Ethan.  Clearly, first and foremost, it needs to be someone who enjoys working with complex cases.  In other words, they've got to want to have him in their practice. They have to be willing to accept the fact that Ethan will see a lot of specialists, so they may not get to work with him a lot, but that he will generate an exceptional amount of paperwork coming across their desks, reports form the specialists, lab results, x-rays, CTs, MRIs.  A good PCP will take the time tow go through all of that enough to keep a good command of his care picture and needs and a really good doc will read it closely enough to find where the specialists have made mistakes or are overlooking something.  For us, a new PCP needs to be accessible and willing to communicate with us directly and not shift us off to their nurse or medical assistant.  There are just too many people involved in Ethan's care for us to loose things in translation. And finally, our PCP needs to be honest with us.  Because if you get right down to it, the specialists will always have another thing that they can try.  It will be a good PCP who looks at the whole picture and says, you know what, we may not be able to push this any further.

It's hard to believe that I've only been home 7 days.  It feels like a lot longer, even though I still can't remember where things are in the kitchen.  Even though our days are calm, it feels like we're running, or at least at a brisk jog.   That seems par for the course around here.

Thanks for checking in on us.  We'll try to write more soon.


Yay for decadent mornings and calm days. Love you guys xx
Sarah said…
I couldn't help smiling for you and your family as I was reading this post!! So glad Ethan is home!! YAY!!!
Anonymous said…
So glad you all are home together again - nothing beats that in this and all around!

Soa few thoughts -for now while you search out and decide on a good PCP could you cont to cobra your insurance and use something like PSI to help cover the cos since PSI has a program specifically for MPS I? Ive not used their cobra program and much of their programs but heard good things about them... It would buy alittle time. Atleast w/my insurance not only do you have 18 months of cobra but then the insurance company (a Point of service plan though not a HMO) extends it double by another 18months to 36total months..)

Things I looked for when switchng my PCP (mine left her practice about 3 years ago to become a hospitalist due to kids and her husband being an airline pilot) and anyways
1. willing to communicate via email.
2. Has a good NP that she works very closely with (when I come in for an appt the NP often pops in to check in to) and that the NP also is willing to be copied on emails/respond if neccessary.
3. They put the paper reports they get in to their system - this is a pet peeve I have of which I had not ever thought about until coming to my current PCP 2 1/2 yrs ago - she reads the reports but oftn does not then have acess to outside ones again bc even though she requests they be entered into MCW system they often are not.
4. Might want to stick with a PCP who is NOT part-time - also mistakenly made this error but ended up working so well w/my PCP's Nurse Pract. that now I hesitate to leave and my PCP will always squeeze me in when urgent/more emergent such as I called fri and she put me in mon or will oftn see me the same day.
5. If possible keep your PCP close by but if possible near Ethans specialists (my PCP is an hour away but at the same hospital system as 90% of my core drs so a bit tricky but she often will just call in say antibiotics when needed and have me do labs or see her after finishing like with these UTIs).
7. And this is really more of a personal thing/comfort issue but ive found younger PCP's in their 30's or early 40's (same w many specialists) are MUCH) more willing to take on complex cases, learn about MPS and think outside the box!

Just some thoughts - and none of these may be workeable for you guys but doesnt hurt I figured to share. :)

So glad you are home and settling into a new routine! We have been thinking of you guys!

Scott and Claire
Elizabeth said…
Love the pictures, especially the new furry E!!! I could just squeeze that little one. Love that stage of transplant. Praise the Lord you all are finally home.
Nguyen said…
Welcome home, Todd!

I am so glad to hear your family back to Portland and especially Ethan is doing well.

Best wishes to your family!